What is the one thing about suffering with severe ME/CFS that the world needs to know? Severe ME Day

@Nielk Thank you and that makes sense now! I was not sure if the article was for PR or was to be published elsewhere as part of a campaign to bring awareness outside of PR. It is a great idea and I fully support it.

The one thing I would like people to know about ME is there nothing you can do about it once you get it. Nobody is going to like me for saying this.

Yes you can take meds, supplements, attempt at keeping your body and mind in a healthy place, pray, scream, go from doctor to doctor searching after that bit of knowledge or that latest study but unless there is a real cure for this horrible illness your body will deal with it to the best of it's ability.

If you can find something to keep your body strong, that is good but keep looking because our bodies needs change and you are only treating symptoms. Accept it and learn to live your life from your house, your chair, your bed.

I've had ME 26 years and being a former expeditor I'm the type that looks for answers, something can always be done. Well my conclusion is without a true cure whatever that entails, we might as well just accept this disease and live the best life we can.

Unless the globe realizes that this is zapping incredible talent and costing money that could bankrupt governments and that people in power can get this disease themselves, we will never solve this.

I would like the world to know that this can happen to anyone, at any time....
The public has been told by the media and by the medical profession (excluding some exceptional doctors and researchers who specialise in ME and are usually ostracised by their peers as a result) that ME is not real, not serious, and something that the weak-minded somehow choose to develop or lack the will power to snap out of.

As you read this, please don't make the mistake of thinking that this could not happen to you. I never thought this would happen to me.

Please open your eyes and your minds to see our reality.

Please try to understand our loss.

Please don't knock what you don't understand. We would not do that to you.

ME has cost me my career, my social life, my hobbies, and friendships. I hope for a better life. You could support that hope for all of those with ME.

And then a list of where to donate money for the biomedical research, and resources to read more...

Severe ME is an endless private torture of unbearable physical symptoms. For me *holding on* to my life and enduring the unbearable symptoms was the hardest thing I have ever had to do in my life. I understand how people with ME take their lives. It takes everything you have to get through severe ME. I am truthfully scarred by it, mentally and spiritually.

I fear going back to severe, I'm not sure I could do it a second time. I have nothing left. I used every ounce of will I had the first time round. I rest all afternoon and evening - I still live mainly in my bedroom, in bed 12 years on.

My hope is that one day no one will ever have to endure severe ME ever again.

Just for one week only, stay in your bed, and crawl on the floor to go to the bathroom.

Then we'll talk.

Severe ME patient.

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My fantasy is a technology that can inflict full blown, immediate onset ME onto normal healthy people, for a week. Bet 99.99% of those people would get the message within 10 minutes, and if we start with politicians then within a month we would have a mountain of research money to work with, and the BSPers would be looking for a job.

Anybody who claims this disease is a 'cop-out from social obligations', and 'an easy ride through life at the community's expense', is a moron or a liar. This is one the hardest roads of all to crawl.

My fantasy is a technology that can inflict full blown, immediate onset ME onto normal healthy people, for a week. Bet 99.99% of those people would get the message within 10 minutes, and if we start with politicians then within a month we would have a mountain of research money to work with, and the BSPers would be looking for a job.

Anybody who claims this disease is a 'cop-out from social obligations', and 'an easy ride through life at the community's expense', is a moron or a liar. This is one the hardest roads of all to crawl.

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@Sean That is brilliant and if only it could be done!!! The politicians only take interest when they or a close family member are affected themselves.

I agree with you that the people who think ME/CFS is a choice or a free ride are "Either morons or liars" like you said. The double standard kills me and no one would say that about someone with cancer or HIV.

With severe ME there are small margins, a huge risk of deterioration, and it makes medical treatment difficult due to side effects. Emergency care is a big risk, it's not adjusted/adapted to severe ME and there's very little acknowledge of it among doctors and carers.

I'm 45 years old and I've had ME since childhood. Since age 25 it's been moderate/severe and since two years ago it's been severe, I'm bedbound/homebound.

I would like the healthy world to know that we are no different, in terms of how we should be viewed by others, than someone suffering Parkinson's, Amyotrophic Lateral Sclerosis, Multiple Sclerosis, Alzheimer's and many other now 'acceptable' diseases.

I want the world to know that whatever they think they know about this illness if their attitude is derisive it's because of misinformation about ME and that the authors of this misinformation are doing so for political reasons that have nothing at all to do with the science of this illness.

Treating us with disdain, dismissiveness etc is simply aligning oneself with the bully. It feels good to be on the side with all the power. So long as you can dissociate from the cruelty that entails.

I'd like them to know of the abuses we withstand, particularly in the medical community. It's not "misdiagnosis" or "under treatment". It's abuse due to overwhelming ignorance- ignorance which is inexcusable and CAN be corrected if enough people give a damn.

Short of lie detector tests in every medical office, I don't know what we have to do in order that we be believed.

My name is Jim. I'm 58 years old. This disease has wrecked my health, but it is society that has wrecked my life. The disease has confined me to the house, but a culture of cruelty has confined me to poverty and isolation. Illness stops me from growing food, while official gatekeepers tell me I don't deserve any. Illness means I still feel cold under all the blankets, while public policy says I don't need heat.

It wasn't disease that physically and emotionally abandoned me, forced me into bankruptcy, sued to take my house, claimed I just need exercise and therapy, and constantly forces me to prove I'm poor and sick. It was people who did all that.

In the US and many other "civilized" societies it is a Crime Against Capitalists to be permanently sick. It's acceptable to be sick for a week. After that, we're depriving The Economy of a chance to exploit our labor and enrich Our Dear Leaders and their wealthy handlers.

This situation will not change until many, many more people, both sick and well, come to understand what modern social institutions are really about and who they serve. Here's a hint: they aren't here to serve working people.

The horrendous, barbaric treatment we receive is not unique to this illness, and the attitudes we experience will not change if the puzzle of ME is solved. Patients of the next mysterious, potentially expensive illness will have to go through this misery as well. AIDS patients were not the first group of sick people to be brutalized, insulted and ostracized, and we won't be the last.

When a reporter asked Mahatma Gandhi what he thought of western civilization, his response was, "I think it would be a good idea".